Lisa: The following piece is from my personal journal, written in late February when I was being swept under by a period of feeling lost and depressed. I captured these thoughts one night as I was reflecting on my despair.  

February is always challenging. My son Eric was killed three years ago and his birthday is on February 20.  February 26 is the last day we saw him before he died on March 26. We call this time of year “Eric season”. On top of this is Gary’s Alzheimer’s and venturing the risk to create AlzAcrossAmerica.

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"I wish I could just cross the river of my journey by stepping on the stones that will get me to the other side, but sometimes it just doesn’t work that way.  I slip and fall off the slippery moss and into the current.  I go into a frustrating but familiar default pattern of my survival.  I am dunked under and it takes awhile to find my way back.  When I’m drowning, every cell in my being is swept away.  I still go through the daily routines, but there is a strange aura of insulation around me.   My senses are dulled and my mind isn’t able to access its natural creative self.  No matter what is going on around me, I am separate from it.  I know that I need to reach out, but it’s hard enough just to get through the day. My daily actions become more of an effort and my mind is like a ping pong game.  Concentration becomes almost impossible for the things that matter most to me.  The very things that I long to do become out of reach. The very things that would seemingly pop me right out and float me back to the shore seem to be a far distance away." 

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Now that I am back to higher ground and on the other side, I see that this fall was different from other times in the last several years.  This time I knew I would come out to the other side because I am learning to practice a technique to help me float back to the surface.   And life is about practice. There is a saying: “How you practice, is how you play.”  I am learning to practice a coaching tool called Emotional Agility, created by my good friend and coaching colleague Carol Courcy, www.saveyourinnertortoise.com.   Carol’s brilliant work offers several tools for many emotions. My default emotion in the last 9 years has been isolation and depression and the technique she recommends to getting across the river and back to the shore is simply to reach out and make a request.  The key is not just to reach out, but to make a request.  Any request.  It may not bring me back to myself in that instant, but with this practice I can start noticing that I am on my way.  My closest friends are there for me.  I am learning to trust that if I reach out, they will be there. Also, I remember that it doesn’t always have to be a friend, a request to anyone for anything will work too. It’s an act of consciousness and being aware that I am practicing and learning to trust that I will resurface.  

As I move forward on this journey of being a Care Partner for someone who has Early Memory Loss and Alzheimer's, I never know when I am going to slip on the moss.  Today is good, tomorrow may be different.  What I do know is that I have to have resources that I can count on, such as practices like the one above and my inner circle of friends and trusted advisors.  My friends are a constant reminder that I am not alone and the more open I am about how this disease is affecting my life, the bigger my circle expands.  If there is one thing that I want Alz Across America to become, it is this:  A big purple bus that travels around the country fostering connections and creating communities where people know that they are not alone on this journey.  I want to help those affected by this disease create their own inner circles of support so that they can keep stepping on the stones to cross the river and have a helping hand for the times when they fall.   Help is always a request away and we need each other more than ever.   We need avenues of connection in order to reach out to each other and Gary and I are here to generate those communities. 
LB
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The New Global Symbol for Dementia

Alz Across America is proud to share this symbol for dementia that can be recognized around the world, with no language barriers!

Thank you Lori La Bey, www.alzheimersspeaks.com for making us aware of this symbol and all the amazing work you are doing to shift the "Dementia Care Culture." and promote Dementia Friendly Communities.    

The Global Purple Angel logo was designed to raise awareness around the world for dementia. Its purpose is simple:

• To raise awareness and education of all types of dementias.
• To show support for those dealing with all types of dementias; both those diagnosed as well as those that care for them.
• To remove the fear, isolation and stigmas associated with the disease.
• To become a global symbol for dementia that has no language barriers.
• To have the “Global Purple Angel” become as well known and accepted as the “Pink Ribbon” for cancer, allowing people to live with dignity.
• To provide an economical way to work in collaboration.

This purple angel symbol can be used by anyone who is raising awareness of dementia anywhere in the world. The symbol has been developed by people with dementia and carers, and is not connected to any established organization.

The purple angel symbolizes a guardian over those living with dementia, as well as their families and friends, but also as a helper to all those working so hard to raise awareness of dementia around the world.

Jane Moore, a carer from Camelford, and Norrms McNamara, who has dementia and was a driving force behind the creation of the first dementia friendly community in the UK, produced the original design. Lynette Richards and Jeff Talbot produced the global version. They own the designs, but have given permission for the symbol to be used freely by anyone who is raising awareness of dementia, as long as they get feedback about how it is used.

- Thank you Lori La Bey:  See more at: http://alzheimersspeaks.com/purple-angel-project

Lisa:  As I write this, the sun is out and it is a beautiful day.  It’s Valentine’s Day. The tree out front is in bloom and spring is in the air here in Southern California.  For me, it’s a day to open my heart, let it shine and be thankful.  I’m thinking of Gary and how the journey to his diagnosis was metaphorically the longest winter of our lives. We have now come through the darkest hour of our relationship together.  Several years were spent in bewilderment and fear of not knowing what was happening to the life we had built together.  Life was like living in quick sand and it just seemed like we couldn’t get a foot hold to shift directions.  In the last year, our relationship has come full circle and our commitment is stronger than ever.  Living in the present moment has never held so much meaning.  The present moment is all that we have and each day is to be treasured; even when it turns out to be a difficult day.  A friend whose wife has been affected by Early Memory Loss said recently, “We each need to take our situations and find a way to make lemonade out of lemons”.  How true.  Each day I learn more about the strengths that I didn’t realize that I have and opportunities for growth whether I like them or not.  I can say that today I know that I have a pretty darn good idea who my family and friends are; and that is very important on this journey.   Today I can say that Gary and I have triumphed in love and we are learning to make our way forward with as much dignity and grace as we can possible muster, both as individuals and as a couple.  “Happy Valentine’s Day Gary, I love you!  We get to greet each new day with “I love you”. I want you to know that I will be here for you every step of the way.   I appreciate and respect all the things that you do for me and I still lean on you in more ways that you know”.      

Today we can acknowledge that we are finally able to bring our own experience of this metaphoric winter into a light that may help others find their way. It’s time to celebrate this new season and new beginning in our lives. Gary and I both feel that if we can reach out to others affected by Early Memory Loss to help to build unity, awareness, support and connection; we will have made a difference.   

Welcome the spring. 

LB

The Care Partner’s Pledge 1. I am willing…to take care of myself. This is not an act of selfishness. 
It will give me the capability of taking better care of my loved one.

2. I am willing …to seek help from others even though my family and 
friends may object. I recognize the limits of my own endurance and strength.

3. I am willing…to maintain facets of my own life that do not include the 
person I care for, just as I would if he or she were healthy. I know that 
I do everything that I reasonably can for this person, and I have the 
right to do some things just for myself.

4. I am willing…to express my emotions, get angry, feel sadness, and 
express other difficult feelings.

5. I am willing … to reject any attempts by my loved one (either 
conscious or unconscious) to manipulate me through guilt and/or depression.

6. I am willing…to receive consideration, affection, forgiveness, and 
acceptance from my loved one for what I do, for as long as I offer 
these qualities in return.

7. I am willing…to take pride in what I am accomplishing and to 
applaud the courage it has sometimes taken to meet the needs of my loved one.

8. I am willing…to protect my individuality and my right to make a 
life for myself that will sustain me in the time when my loved one no 
longer needs my full-time help.

9. I am willing…to expect and demand that as new strides are made in 
finding resources to aid physically and mentally impaired persons in 
our country, similar strides will be made towards aiding and supporting 
care partners.

10. I am willing…to honor that I am a whole and complete person who is 
proud to be a care partner for my loved one affected by Alzheimer’s in 
order to help remove the stigma attached to this disease.

"This pledge can be found by clicking on the circle on our Home Page"

Revised by Lisa Bricker, Adapted from the book, Care Giving: Helping an Aging Loved One, by Jo Horne, published in 1985 by the American Association of Retired Persons.

Lisa: There are many people in our society that are caregivers because they truly have a passion to provide care for those in need.  Many have chosen to make their living this way.  I admire, salute and respect these people. I believe that they have angel wings and a very special purpose on this planet.  However, that is usually not the case in caring for a loved one and in most circumstances; the need comes on top of our day job and is not a paid position.  Memory Loss usually happens over time, and you will hear me say over and over: “there is no road map on this journey” and there is no predictable pattern to follow.  It can come on quickly or very slowly, each person’s situation is different.   

The journey of living with someone with Memory Loss is a random and challenging trail to traverse.  Our daily lives become unpredictable and it can uproot the delicate balance of our lives.  Everyone’s experience and family histories are different.  The dynamics of each relationship are different, but the one common denominator that we all have in providing for our loved one is that we need to take care of our own well being first.  The metaphor of being on an airplane in an emergency with a child is so true:  “If we don’t place the oxygen mask on ourselves first, we won’t be able to help anyone else.”  It’s also easier said than done.  Taking care of ourselves is a common topic in our support group and there is never an easy answer and many times, we say “yeah, right”.  However, it is still our responsibility to care for ourselves and those around us.  After all, the best medicine is to stay healthy.  I have been the daughter of a father with a terminal illness, I have been the daughter of a mother with vascular dementia (small strokes in the brain) and I AM now the wife of someone who has been diagnosed with Alzheimer’s. As a daughter of someone who had dementia, the role was vastly different than having a life partner with dementia. My role in caring for my mom was much clearer. I remember saying to myself, “Okay, I need to be the parent now and you are now like my child”. It was also a role that I was able to share with my sister Vicki.   

When your life partner has Memory Loss, the changing roles can be very confusing. The person who has been your friend, partner, lover and confidante is no longer available the same way they used to be. There are times that feel like they always did and you naturally lean in and enjoy that relationship that is so wonderfully familiar. Then, there are the times when it is clear that it's not the same and the cloud of sad reality is once again overhead with the reminder of how the cruelty of this disease affects all who are involved. A strange feeling of loneliness and isolation can come into play because you just can’t have the depth of the conversations that you used to enjoy together.  Those with Early Memory loss begin to lose their critical thinking skills and their executive functions (such as the ability to plan ahead or make decisions).  Many of the conversations we have need to be repeated over and over again.  I call it the new version of 20 questions; the same two questions 10 times.  It can be just as frustrating for Gary as it can be for me. I have learned to just let it roll, but we all have our moments!  It certainly helps to be patient, loving and kind. It also helps to keep your sense of humor! 

I’m going to introduce the term Care Partner to see if it is a role that may fit for you. Please feel free to engage in the following exercise so you can “try on” both roles:  Take two blank sheets of 8 ½ x 11 paper.  On the first sheet write in large letters “Caregiver” and on the other write “Care Partner”.  Place both sheets of paper on the floor about 18 -24 inches apart.  Stand and look down at the first sheet of paper and notice how that feels, take it in.  What do you notice? Take your time.  Now move over to the second sheet with the words “Care Partner”.  Notice if there is a difference in how you perceive the two terms.                         

The Alzheimer’s Association uses the term “Care Partner” and I have absolutely loved the term since the moment I first heard it. It’s a word thing for me and it literally feels different if I refer to myself as Gary’s Care Partner.  I see it as an empowering metaphor and I use it to self manage my perspective to see both of us as “whole and complete”.  It is a very subtle distinction in how I view my role in our ever shifting relationship.  Try it on and see what you think.  For me, the word caregiver isn’t right for me in this role with my husband; my partner.  The word caregiver itself makes me feel more depleted; as if I could give and give without being able to care for myself.   As his partner, I feel that I can keep both of our interests in better perspective and I am compelled to meet other care partners that share this journey. I am Gary’s Care Partner and I have chosen this role with love, dignity and honor.  We may not have chosen these circumstances, but we can make choices that will help us to remain as healthy and whole as possible throughout this journey.  Caring for a loved one can be a tricky role.  How do you see your role?   What choices are you making for yourself?  How can we help each other?
LB

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Gary: It’s just really weird – this human condition, that is…one day you feel like a million bucks and the next you feel like you fell into a deep well that’s about to dry up in the drought you didn’t know was coming. That’s how I’ve felt the last few days. I happened to have picked up a book that someone lent to Lisa and I read a story written by a Care Partner on someone more advanced with Alzheimer’s.  A portion of the account hit me hard. It described the mental decline of their loved one due to Alzheimer’s and the point where the disease completely took over this individual’s mind and body.

Of course I always knew I would die some day, but I’d hoped it would be something sudden, like the aortic aneurism that killed my mom – she didn’t have time to know what hit her. And of course that could always still happen to me, but my mom was 84 years old and if I live that long I will most likely not know who I am by then unless some miracle Alzheimer’s cure is discovered.   Anyway, sorry to be Debbie Downer, but I know depression often comes up in conversations about Alzheimer’s and other Memory Loss, and it can occur to both the Care Partner and the Memory Loss “victim”.

If you want to learn more about Alzheimer’s, here are some facts compiled by the Alzheimer’s Association regarding the disease:

1.      Alzheimer’s is the sixth leading cause of death in the United States.

2.      More than 5 million Americans are living with the disease today.

3.      1 in 3 seniors dies with Alzheimer’s or other form of dementia.

4.      In 2012, 15.4 million caregivers provided more than 17.5 billion hours of unpaid care, valued at $216 billion.

5.      Nearly 15% of caregivers for people with Alzheimer’s or another dementia are long-distance caregivers.

6.      In 2013, Alzheimer’s cost Americans over $203 billion, and that number is expected to rise to $1.2 trillion by the year 2050.

Let’s hope and pray that a cure can be discovered before the Baby Boomer Tsunami comes.

Like I’ve said before – I want to be part of the solution, not part of the problem, so I hope to be a future candidate for medical trials designed to test new medications which may cure or stop the progression of the disease.

P.S. For those who are interested, below is a link to a site that discusses how to tell when memory problems may signal Alzheimer’s or other indications to seek help:

http://www.caring.com/articles/memory-worries

GB
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Gary: As Lisa has said in her blog 2005 started out as a fantastic year.  It was (and still is) the only time I’ve been to Europe, and it was in many ways the best year of our lives together. We had a wonderful time in France, first staying in Paris for a couple of days, wandering the streets and enjoying the sights.   

While in France Lisa and I went on a bicycle trip through Provence and also visited some family friends in another region.  Our trip was really special.  We stayed in castles and chateaus by night, then every morning we hit the road and enjoyed the spectacular countryside. Provence is a beautiful area, but our route took us over many steep hills, and I was typically the one huffing and puffing as the last person in the group to make it up the hills! One of the great things about the trip is that we feasted on gourmet meals, but because of the biking we didn’t gain weight!  I had learned a little French before we left and I could tell that the French people we met appreciated my efforts. For some people the French have a reputation for being aloof, snobby, whatever you want to call it, but we found them to be friendly and helpful – perhaps part of it was my attempts to speak their language.  I remember one time being on a train and Lisa and I were hungry. I approached a lady and tried to ask her if there was a dining car on the train. Finally, a light went on and she said “Yum-yum, Yum-yum??” I said “Oui!! – Yum-yum” and she pointed us in the direction to get something to eat.  Here’s a picture of us on our bike trip (taken on one of the few flat areas!):

I had a great job at a company with an office in El Segundo, CA – just 4 miles from where we lived in Redondo Beach. I was an attorney and also was a Vice President of the company. Because my boss traveled so much, I became the “go-to” guy in the office and handled not only my job but whatever personnel issues arose from time to time. All of us in the office got along great and we became friends, and still are.  Unfortunately for Lisa and I the company was sold in 2005 to a large conglomerate and over the next two years things would drastically change. While writing this I received a call asking me if I wanted to go to lunch today with 2 of the guys from the office. They are the 2 guys in the first photo below who are on the far left and far right of the picture. The other photo is from the day I left to take another job in 2007 and has almost everyone from the office in it.  This was a great time in my life.

The latter part of 2005 was not wonderful at all. Lisa’s father became very ill and they moved to Redondo Beach to be closer to us. As such, we were witnesses to his decline and the futile efforts of the doctors to knock out his lymphoma. He ended up dying from his weakened condition caused by the chemo treatments, but to the doctors, they had “cured” the lymphoma. After he passed, Lisa’s mom, who had counted on and relied so heavily on her husband, came and lived with us. Even though she was in the early stages of dementia, we enjoyed some good times together before she moved into assisted living. While living with us, “Mom” is the one who got me hooked on eating chocolate covered almonds.  I have to admit that I’ve become a regular chocoholic!     

2005 is a year that will always be seared in my memory because it would set the roller coaster ride of the next 8 years into motion. What started out as the best year of our lives together, transpired into something that was completely unexpected and all consuming.  This story is about how I took on a new role for my parents’ called ‘Caregiver’; a role that no one really understands until you are deeply living it.       

Gary and I were doing well; we were both flourishing at work and enjoying life.  I started a coaching practice in 2001 and worked with entrepreneurial business owners and professionals.  The fruits of my labor had paid off and it had grown into a thriving referral based business.   We had been married 6 years, had achieved some milestone goals and could finally say that we were financially comfortable and on plan.  In June we celebrated by going on a dream vacation, visiting friends and bicycling in the Provence area of France.  We had taken a French class prior to the trip. Gary was amazing; he picked up enough of the language to get around quite well in Paris and in the countryside.  It was the best trip ever and it was the best year ever because so many great things were happening.     

The tables then turned.  Just when we thought we had accomplished sustainable momentum in our lives and thought that we were on a roll, July 2005 brought some bad news.  My dad was diagnosed with Stage 3 lymphoma at age 78 and my mom age 87 was starting to show signs of dementia.  Dad and Mom had always been very active and bounced back and forth between Costa Rica and a remote area of northern California.  Everything changed. In order for Dad to go through chemo, the oncologist told us that he would need to live within at least 20 minutes to a hospital and their current living situation didn’t cut it.  We all agreed that they would move to Redondo Beach, so they rented an apartment in very close proximity to our home.  
By the end of 2005, Dad’s health was deteriorating rapidly and their situation required more and more of my time.  As a daughter, there is an innate sense to “take care” of our loved ones.   You can really be taken aback and unprepared by a sudden change in your role in any relationship.  In my dad’s case, he was the strong one, a driven and accomplished individual.  People depended on him.  There was no way that this could possibly be happening. We always assumed that because my mom was older and had had some health problems that she would be the first to go. Something inside you goes into auto pilot because it’s your parents and you find yourself doing whatever you can to help because you love them. It’s a natural reaction.   It is very easy to place others’ needs before your own and it can happen even on an unconscious level.   There is one thing that I am going to be saying over and over again:  There is no roadmap on this journey when you are caring for a loved one and every situation is going to be different.  Being needed and being on high alert and overdrive for a loved one can become a trap before you realize what is happening.  The next thing you know, you are living in a state of adrenalin and your life is completely out of balance. Our first trip to the ER was when Dad couldn’t sleep and took it upon himself to take an additional sleeping pill.  He fell in the bathroom, hitting his head in the middle of the night.  Your life can quickly become about waiting for the next drama to occur and you won’t even realize that the quality of your life is in jeopardy.     

My dad died in May of 2006.  He died in Costa Rica which is a story and adventure in and of itself to be told at a later time.  After dad Died, Mom moved in and lived with us for almost 6 months before moving to an assisted living community in Northern California.  

A lot can happen in a year and this story just scratches the surface of all that did happen that year.  In addition, the company that Gary worked for sold to a large Fortune 50 company and would start changing drastically over the next two years. But before I share another story, my next blog will talk about the words Caregiver versus Care Partner (a term used by The Alzheimer’s Association) and why I think it’s important to pay attention to how you use these terms and how it may help you maintain your perspective and quality of life.            

How do you know that you or your loved one may have Early Memory Loss or Alzheimer’s disease?  Unfortunately, there is no simple answer to this very complicated question. Alzheimer’s was certainly the last thing on my mind until we got closer to the point of receiving the diagnosis. Even though my husband and I both knew that something was terribly wrong because our marriage was under great duress; the big "Z" word was not on the radar.  One of the main reasons for this is because Alzheimer’s shows up in such subtle and random ways over time; it is not consistent or linear in the beginning.
If someone were to have told me nine years ago back in 2005 what my husband Gary and I would go through by the year 2014, I would never have believed them.  Never in a million years.  He was my hero and he still is, however today he is a different kind of hero for me.   Gary was diagnosed with MCI (Mild Cognitive Impairment)/ Early Onset Alzheimer’s at the age of 63 in December of 2012 by a neurologist.  The diagnosis came almost as a strange relief in  being able to label what had been happening to our marriage and our financial stability over the last several years.  I have to tell you that Gary has taken this diagnosis with the utmost grace and dignity, but the journey leading to his diagnosis was filled with sadness, grief, struggle, anger and isolation; nearly destroying our marriage, our self confidence and everything that we had worked so hard to achieve  together.

Now that we know what it is we are dealing with, Gary and I have decided to take action and turn this chapter of our lives into something that can make a difference.  We have created AlzAcrossAmerica to write and speak about our journey to help raise awareness for Early Memory Loss/ Alzheimer’s disease because we know that we are not alone.  It wasn’t until Gary was finally diagnosed that we were able to reach out for help and join a support group through our local Alzheimer’s Association.  I cannot say enough about the lifeline that the Alzheimer’s Association has been for us and we encourage everyone to reach out and to access all and any tools and resources available to make the quality of your life healthier and more livable.  We know that NO ONE gets it or understands what you are going through unless they are living it too.  AlzAcrossAmerica is about helping to bridge the gap and connect with others who can relate to what you are experiencing.  It’s about the building of a conscious community that needs to grow in unity as those affected are able to grasp what is happening, access tools and resources and no longer be embarrassed, ashamed or isolated.  Did you know that every 64 seconds someone is diagnosed with Alzheimer’s disease?   I feel like a Paul Revere of modern times because a staggering number of our generation, the Baby Boomers, will be either the one with Memory Loss or will be a care partner for a loved one. Like it or not, the odds are not in our favor.  Gary and my old goals and dreams may be shattered, but our new vision is to start locally in the south bay of Los Angeles so that we can reach out to those affected and to help create awareness for Alzheimer’s Disease, particularly Early Memory Loss and make it okay for those affected to come out of the shadows and reclaim their lives while they still can.  This community needs to grow so that talking about Alzheimer’s disease and other forms of dementia can be discussed in the open.   We invite you to join us.  
In service with hope, peace,and goodness,
Lisa Bricker

My name is Gary Bricker. I have been diagnosed with “early (or “young”) onset” Alzheimer’s disease.  I am, or more correctly I used to be, a transactional Real Estate Attorney, and as such I primarily created commercial real estate documents such as leases, purchase agreements, construction contracts and the like.  I never worked for a law firm and always worked for companies that owned and/or leased a great deal of real estate due to the needs of their core business, or were companies solely in the real estate business.  Now I can no longer do any legal work and I miss being able to do so. In fact I lost my last two jobs for large companies, one of which was with a national company where I was a Vice President and Corporate Real Estate Counsel. I once was very good at my profession and it filled me with satisfaction to help companies/people get their real estate needs fulfilled.  The realization that this disease was the reason that I lost my last two jobs came hard, but it also answered the question as to why I had struggled so much in those jobs and ultimately lost them.

I am lucky in so many ways, however, mainly because I married a wonderful woman – my wife Lisa.  She and I have begun this new chapter in our lives, dealing with this insidious disease that I have. In a way it has been a blessing to have been diagnosed, because it answered many questions – prior to the diagnosis we had no explanation for my forgetfulness. I thought I might have Attention Deficit Disorder and Lisa thought maybe I was just not paying attention to what was said, etc. because I couldn’t always remember things she talked to me about. Now we have the answer and we have learned so much about Alzheimer’s and other types of Memory Loss, which has helped us to cope with the disease.

As a result of my diagnosis, and the realization that this disease currently has no cure and ends in death, we wish to be part of the solution and not part of the problem.  Unless a cure is found, this disease is going to decimate the Baby Boomer generation – and frankly already has a strangle hold on many of us due to income loss, cost of care and other expenses. Lisa and I decided to create AlzAcrossAmerica – a non-profit organization aimed at creating greater awareness of this disease – to let people that are affected by Alzheimer’s and other memory loss problems know that they are not alone and there is support available to them and the care-partners that assist and support them. We look forward to hearing your stories as we share our stories with you on this journey called "life".
GB